EM symptoms and quality of life

Health practitioners observed that, among their patients, hot flushes and night sweats are particularly common symptoms of EM. They noted that in addition to being uncomfortable, vasomotor symptoms are one of the causes of sleep difficulties for women and as EM is also associated with changes in mood and anxiety, these can lead to a ‘cumulative effect’ on a woman’s quality of life. Ms Hay, a breast care nurse, described hot flushes as ‘quite troubling’ for some women because of their impact on sleep quality: ‘no sleep – it’s not conducive to a happy life, combined with hot flushes and sexuality.’

Dr W, an endocrinologist, explained how symptoms of EM can impact various aspects of women’s lives.

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The symptoms are pretty common regardless of what type of menopause it is. The classic symptom is hot flushes and night sweats. And that can be really debilitating for some women. So I’ve had a few women who carry around spare changes of clothes in their car, who get – particularly who find it difficult if they’re doing a lot of presenting. So say they’re a teacher in front of class or they’re in a board room a lot and they just start sweating – or they’re having to shower multiple times a day.

I think if they’re getting a lot of hot flushes and they’re not sleeping and they’re exhausted all the time; insomnia’s very common. The overall lack of energy I think is something that people really find distressing. I see a lot of women who have mood disturbance as well. So either they’ve been prone to depression in the past and it’s triggered that again, or through this whole process they’ve become really anxious or depressed. That’s particularly common.

While symptoms of EM can be debilitating for some women, health practitioners commented that others experience fewer or less intense menopause symptoms, including after medically-induced EM.

Dr C shared her thoughts on patients who do not experience strong EM symptoms.

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I’m sometimes surprised that some people don’t get much, symptoms wise. Because I’m very biased, as in I only see people who do get symptoms with menopause. There’s a whole bunch of people out there who don’t get very much at all, so I think I always get a bit surprised if I have someone who I’ve given surgical menopause to, and they don’t have many symptoms.

Some people are surprisingly lacking in symptoms all together, or maybe they had some menopause before and I didn’t realise it and we just did their hysterectomy and their ovaries out at the same time and really there wasn’t much function left in their ovaries at all and that’s why they weren’t getting many symptoms. So now I sort of tend to say, “Look, why don’t we see if you can string it out to six weeks for a visit then and see how your symptoms are going and let me know,” or, the other deal is, “If you’re terrible when you get home and you’re just going to murder your whole family and cry in the corner, then maybe we should do it a bit earlier.”

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If a woman has presented and early menopause is the main issue, it might be that she’ll be concerned about things like hot flushes, sleep disturbance, her mood. So the women can find that their mood is increasingly irritable. They can have increased anxiety. Some women feel very, very hopeless about the situation and so they might present with depressive symptoms. Women may have relationship concerns.

A lot of women talk about feeling that they aged as a result of their early menopause. There’s even a sense of loss around concentration.

So if women are struggling with concentration difficulties which can arise during early menopause, a woman in a high-functioning position at work can see that as quite a huge loss. Losses around quality of life. Some women feel quite embarrassed by it.

For Professor Kulkarni, a psychiatrist specialised in women’s mental health, depression and anxiety are the major symptoms of EM among the women she sees.

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The biggest thing that I’m seeing is, and again, this could be the self-selected population, but I see women who experience mental health issues as the major issue that’s troubling … menopause doesn’t receive much attention, but the attention that it does receive revolves around hot flushes. And in my experience, the hot flushes are the second or third line complaint that the women have. The biggest detractor of a good quality of life in this population is depression and anxiety. I’ve got to say there’s an awful rise in anxiety symptoms with panic, but both domains, depression and anxiety, obviously are mental health issues.

There’s a spectrum of physical symptoms and a spectrum of mental health symptoms and I don’t want to be medicalising menopause, but nonetheless, there are women who really suffer. And, let’s not forget, that if she’s suffering, there’s a whole other ripple effect into the adolescent children that she might be responsible for, sometimes elderly parents that she’s also caring for. In middle age, this is a woman who might be a senior manager in the workforce. So, if her quality of life is so impaired that she’s not able to function in all those domains, not only is she unhappy and not fulfilled, but there’s a whole lot of other people in society that will suffer as well.

So, we always need to listen to our patients. I mean, that’s such an obvious thing, and yet we still don’t do it. So, it’s not about medicalizing everybody who’s got menopause, but the woman who’s come in saying, “Look. I don’t know why, but things have suddenly fallen apart for me.” And there’s nothing really overt that’s going wrong in her social or relationship life. Then we need to think biological. And, we need to stop sort of thinking that reproductive hormones stop below the waist. And that’s the point that I think would be really great to get across to standard health care professionals, but also to the general public.

Urogenital problems including vaginal dryness and incontinence were mentioned by several health practitioners as difficult symptoms. Dr Barker, a general practitioner, noted that vaginal dryness was ‘common’ in women with EM and could lead to difficulties in intimate relationships. An obstetrician-gynaecologist, Dr C commented that ‘bladder urgency’ could be ‘quite debilitating’ because it can impede women from doing certain things, for example travelling.

Dr G shared how she approaches sex and relationship difficulties arising from EM symptoms with her patients.

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If you’re trying to have sex with your partner and you’re having hot flushes, the last thing you want is to have a body right close to you. So the heat from another person’s body is so uncomfortable for these women and of course that’s not ideal at all when you’ve got an early relationship.

A good sex life is so important in a relationship. It’s so important for our quality of life, for our mood, for so many things. So that’s very difficult. There’s also an issue around dryness in vaginas and, you know, these poor women, they’ll talk about feeling like they’re having sex with a sandpaper-covered penis, or something along those lines and it’s horrific for them. The pain is excruciating and often by the time they’ve come to me, they’ve had discussions about this with their doctors and sometimes those discussions are dealt with very well and there’s a lot of information given. But it’s frustrating for them because there’s not always the options available for them.

Cancer treatment and EM symptoms

Premenopausal women diagnosed with cancer may undergo treatments such as bilateral oophorectomy, chemotherapy or radiotherapy which may cause EM (see Telling women that cancer or medical treatment may cause early menopause). Women diagnosed with oestrogen positive breast cancer may have monthly gonadotrophin releasing hormone (GnRH) agonist injections (e.g. goserelin) to cause ovarian suppression. This treatment does not cause EM as it is potentially reversible, but causes menopausal symptoms due to lack of oestrogen. Hormonal therapies such as aromatase inhibitors or tamoxifen can also cause menopausal symptoms due to their anti-oestrogen effects but do not cause EM. A few health practitioners noted that for women diagnosed with EM as a result of cancer treatment or undergoing ovarian suppression , the experience of symptoms can be sudden and more difficult to deal with, compared with women diagnosed with spontaneous EM.

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We have the acute side effects of hot flushes which can sometimes be debilitating, particularly hot flushes at night that significantly disrupt sleep and a lot of issues around the treatment that we give I think relate to sleep deprivation, so loss of concentration and short term memory and some of those things that are put down to chemo brain and other things like that I think may have something to do with sleep cycle. And certainly most people know that when they’re jet lagged or they’re significantly sleep deprived, it’s much more difficult to think straight.

So you have that issue, you have the issue of joint pain and oestrogen is incredibly important for normal function of joints and tendons and cartilage and things like that. So a significant number of women will get aches and pains and then a smaller number will actually get significant arthralgia where they get pain or stiffness in their joints particularly in the morning so functionally that can be quite challenging in what has previously been a fairly fit or hopefully fit, young woman that they start to feel like they’re 90, you know from the joint point of view.

On top of that, is issues around sexuality and the loss of libido and also development of atrophic vaginitis in the longer term which makes sexual intercourse difficult and so they don’t feel like having sex and then it’s painful when they have sex. So they don’t have sex and that can become a long term issue which then relates to partnership issues and marital issues and lots of other social type issues as well. So from the acute loss of oestrogen you get a lot of problems, it can also affect cognitive function so short term memory, concentration also can be affected by that as well as the sleep deprivation.

So women that are high functioning, that look after kids and remember lots of things suddenly can’t remember why they walk into a room and they have to write things down and you know so from that point of view even just the acute problems related to menopause are potentially – not always – but potentially quite debilitating.

You then get to the issue around you know everything else that they’re having at the time whether they’re on chemotherapy, whether they’re on other drugs, those sort of things that are also affecting them. And then when all of those things stop and they settle down and the menopausal symptoms are still occurring, hot flushes can last for years and there can be incredibly intense sleep deprivation, joint problems, all of those things can be significant issues and then you add on top of that the potential for longer term issues related to premature menopause such as bone health and the idea that they need to now look after their bones and have them checked on a regular basis and the second is cardiovascular health and the risk of developing ischemic heart disease, cerebrovascular disease, those kinds of things will increase.

Dr S, a medical oncologist, discussed the symptoms that she sees among her patients, and explained how she approaches the severity of symptoms such as hot flushes.

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I think that insomnia is very difficult to deal with because insomnia then affects your day job and your day life, so that’s a big one for my patients. Mood changes, people already know that cancer patients have higher rates of anxiety and depression and often it goes under recognised and under treated so there is that. The hot flushes, but don’t complain so much about hot flushes alone because I think sometimes they expect that even if they didn’t have cancer they would have gotten hot flushes when they became naturally post-menopausal. But I think the symptoms that really worry people are insomnia, mood changes, and especially depression, and then because they are on aromatase inhibitors, joint aches and pains can be a real deal-breaker. So you know I have women who are teachers or swimming instructors who can’t move because of joint aches and pains, plus other post-menopausal symptoms. So, the aromatase inhibitor related joint symptoms are a real issue. But in terms of menopause if you ask me, I would think insomnia, mood changes and then hot flushes which causes embarrassment.

When women complain of hot flushes, it is important to get a good history about how many. So I had a woman yesterday who says she has two hot flushes a day and so you know she is not somebody in whom I would be keen for medical management with drugs because I think that all drugs have side effects and you know patients in general are keen to avoid drugs and to combat the effect of one drug with another is not what I do. So you know things like depression, cognitive fog, insomnia etc., I think about whether they need to see a psychologist, whether just having a good conversation in clinic is enough to allay some of their worries. I tell people that I have seen side effects abate in women so either they become used to it, or they actually do abate and so that’s something reassuring, but doesn’t happen to everyone.